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Old 06-18-2012, 01:47 PM   #1
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UP back after 2 years, but different?

So i was dx with UP in 2006 ( mucous, bloody stool16-17 cm) , treated with Canasa, Flax, VSL, for about 8 months. Tapered to nothing, training for marathon ( 2010) , symptoms returned, but worse then ever...5-6 time/day bloody stool, diarrhea,severe pain,. just horrible. Had a sigmoidoscopy, 18 cm, proctitis, started enemas, and canasa, took about 2months, went away, tapered after about a year to nothin. Fast forward to March, ( 2012) was probably eating a little more tabasco sauce, plus started to take ALleve again ( hadn't taken them since 2006). Started constipation, then nausea, then the symptoms of UP, but never bleeding, just feeling like I had to have BM, pressure, pain with BM, started canasa, and rowasa, symptoms went away, but not completely.
Start training for a triathlon, and about 3 weeks ago, started pressure badly, and started seeing specks of blood again. Enema, and supps daily, symptoms aren't worse, but not a lot better. One day nothing, one day pressure. Blood is once a week, and only a speck or so, but still there.

Mostly issues are rectal pressure, morning stomach pain, bloating. by the afternoon, after enema, flax, mint tea, I feel better. But after any BM, pressure hangs on for about an hour or so.

My colonoscopy is Wed ( endoscopy too), and I want to know what suggestions you have for my MD>

Also, does UP cause upper abd bloating?
And does it cause the symptoms that I have even with out the blood?

It's not nearly as bad as 2010, but it's still hanging on...would you suggest oral meds?
And finally, my GI never tells me that I need to do something, supps, enemas, etc...for the rest of my life, but I kind of think I should...? If not every day, at least weekly or something to keep the inflammation down??

ANy thoughts???

 
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Old 06-18-2012, 11:29 PM   #2
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Re: UP back after 2 years, but different?

The symptoms sound as though your UP flare (inflammation) is a bit lower than previously..meaning more limited and milder at this point (because no bleeding).

The upper symptoms are common with limited in the rectum inflammation as well as the other obvious such as rectal discomfort.

Why are you using the enema during the day? When are you using the Canasa?

I would suggest you ask your doc for dicyclomine, it's an antispasmodic that can help with some of the discomfort/spasming.

What was your tapering process in the past?

Basically, you should be on maintenance rectals after tapering to every second night, then to every third or twice a week...indefinitely .
Increase the enemas at the first symptoms (which could/could probably be constipation and change of stool that reflect a slower moving colon).

Are you taking the flax oil as your omega 3?

I would definitely suggest a low dosage of oral 5aSA such as Asacol or even Apriso to keep everything above the rectum/sigmoid in a nice quiet state. Plus...it's believed that 5ASA is a good protector as well..helps lessen the cancer risk.

Do you have copies of your previous biopsies?

Hope the scope goes well on Wednesday....ah, the dreaded prep. What will you be using?

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Old 06-19-2012, 03:31 AM   #3
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Re: UP back after 2 years, but different?

Good Morning!

Thanks for your reply, you are very knowledgable on this subject and i'm so grateful that you responded.

I'm using the enemas twice a day because I obvioulsy have no idea how to treat this and a medical website said i could to twice daily enema and twiece daily canasa...? Of course tday, PREP day, is the first day that I have felt the best since starting them twice a day about a week or so ago.

I have the prescription for the antispasmodic, but I never filled it.


My tapering in the past has been basically every night supps, to every other, to every 3rd to weekly, ish...to nothing.

I put 2 tsps of ground flax in oatmeal every day, have been since the first flare in 2006. I had stopped this year, because I was trying to up my protein for the triathlon training...that's when things started to go badly. I was eating eggwhites with hot sauce every day, and taking Alleve for achilles tendonitis...not every day, but I know better...

I was wondering about the upper abd symptoms...I had an upper abd ultrasound in March but it was normal, so I figured it ws from the UP, of course my GI was like " well, it could be"? He wasn't very definitive on that, but I was pretty sure...

I have copies of everything


I'm having the tests done tomorrow at noon...( moved from 7am sadly), so today im clears, at 2 it's ducolax, then miralax. Then nothing...I hate the prep....

So i should speak to him about oral meds AND supps? His feelings are if it's limited to the rectum, the supps and enemas are better absorbed?

Thanks again for responding...I'm pretty clueless with this and I am sure I should be seeing a different GI...

Can you explain why it appears to be just limited to the rectum based on the symptoms? So The bleeding comes from higher?

Last edited by hb-mod; 06-19-2012 at 05:05 AM. Reason: Please don't post unapproved websites, per Posting Policy. Thanks.

 
Old 06-19-2012, 06:35 AM   #4
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Re: UP back after 2 years, but different?

If there is no blood present, you may just have extreme IBS. That can cause all your symptoms and you could be getting it because of your change in diet or just anticipation of your events when training. I have the same issue, but I get it under extreme (I mean extreme) stress.

I was diagnosed with sever UC and had a massive flare in November 2011, in May 2012 I had a second c-scope and they said I was perfect. Not remission, perfect! I said how? The doctors were not sure, so they gave me a blood test called Prometheus. Have you had it? If not do it.

It tells you if you have any form of IBD, if you don't and it come back clear then it is more than likely IBS. I would then do what I did, get a life coach or someone you can really talk too.....it helps

 
Old 06-19-2012, 06:45 AM   #5
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Re: UP back after 2 years, but different?

I have no bleeding with most of my flares because I recognise symptoms early and treat my upping the rectals to nightly.

Regarding the bleeding...remember that there are incriments in inflammation. Bleeding means that the tissue has already increased inlammation to the point of friability/fragility.

Most of us with UC have IBS, and while some of your symptoms could be IBS, I would suspect it is NOT with the rectal / upper discomfort.

I personally wouldn't treat with enemas twice daily at this point. If you have Canasa, use it during the day and the enemas at night.

The oral/rectal treat both ends approach is the best...the oral for coverage above to help it from spreading upward. Yes, the rectal meds regardless how high it is because UC flares start at the rectum.

Looking forward to hearing how your c-scope goes..sucks it's late in the morning...enjoy your after-scope breakfast.

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Old 06-22-2012, 04:43 AM   #6
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Re: UP back after 2 years, but different?

There is increasing evidence that food intolerances such as gluten and diary, may play a role in inflammatory bowel disease. I would suggest getting some blood work to check for celiac disease, and wheat and dairy IGG antibodies (delayed allergy testing), all blood tests. Be sure they do the IGG, not IGE, as IGE only tests for acute allergic reactions to foods such as will cause anaphyllaxis to peanuts. Gluten and dairy and many other food allergies are more slowly reactive and insidius culprits in the GI tract, which IGG measures. A functional medicine doctor will be more familiar with this approach. Food intolerance typically causes the upper abd. bloating. I agree with the previous suggestion of Asachol for prevention of these flares. If the involvement is up to 17 cm, that is clearly in the sigmoid colon as well, so not confined to rectum. This is a serious disease and should be treated seriously and aggressively enough to prevent flares like this and progression of the disease up the colon. I also wonder if the ground flaxseed could be aggravating it, as it is used for a laxative, and it's coarse, hard texture could be irritating to the inflamed mucosa of bowel.

Last edited by ladybud; 06-22-2012 at 04:44 AM. Reason: typo

 
Old 06-24-2012, 01:56 AM   #7
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Re: UP back after 2 years, but different?

Thanks for everyone's suggestions...so the test was fine, but of course the prep...oy...just can never seem to do that without vomiting..right before the last cup of fluid...anyway, it's over..
So he spoke to me when I was still recovering, but from what I remember, he said, it was a smaller area, more mild instead of severe, exactly as you predicted Quincy...
He said to do whatever I was doing...then I told him I was doing 2 enemas and 2 suppositories for about 2 weeks...and that's when I thought I heard him say we can start something like 6MP?
The other thing was he found 1 ulcer in the ileum? The first time I had a colonoscopy ( not from him) they found 3 ulcers in the ilieum...and I am pretty sure they did some blood test for Chron's? I'm almost 100% sure they did it, and it was negative. But he seemed a little concerned about that ulcer? Does anyone know why? If I had the blood test done and have had 4 colonoscopies since then and never have any biopsies said Chron's, could it still be?

Again, I was out of it, and my husband wasn't there yet. But he did say the same thing to my husband, that it was better than 2 years ago. I knew that just because this time, there really hasn't been any bleeding...just very very little staining, and that's only maybe once a week at the most...
So I do feel better about the improvement, but I really want to make sure it doesn't get as bad as 2 years ago.
Any suggestions? Im meeting him next week to find out biopsy results ( there were come ulcers in my stomach )
Right now Im using Canasa three times a day...I have my triathlon in 2 weeks, so I want tomake sure I stay controlled...then after that, I will start whatever.
Should I ask him about oral meds in addition to the canasa? If so what do you suggest?
ANd what about VSL ? I can get a script for DS so my insurance will cover it? I used it in the past and liked it, but was wondering anyone's thoughts?
Thanks again for everyone's thoughts and suggestions!!! this place has always been a life saver to me.

 
Old 06-25-2012, 11:19 AM   #8
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Re: UP back after 2 years, but different?

Hi...congratulations on getting through "most" of the prep..good you only threw up the last bit. By then, the prior amount would have done its thing.

You had upper and lower scopes..wow, lots in one session, but considering you're having multiple ulceration areas, best to do it.

Basically, CD can happen anywhere in the digestive tract from mouth anus, different areas at the same time. Considering inflammation areas are in the ileum as well..I wouldn't lean toward you as a UC patient.

I'm not clear on the term ulcers. In the stomach I can understand if they're isolated and inflammation areas that include ulcers. They, however, could be caused by h. pylori...hope that it's the issue...they can be treated by antibiotics. If they're not, then it's possible that CD is the culprit. Biopsies may tell the story.
The term ulcers in the ileum...again, is that meaning areas of inflammation including separate ulcers?


Regarding testing for CD/UC differentiation via blood test...no such definitive actually. The prometheus isn't a guarantee. I know of many who have had the testing...stated no, no, no for CD. And after colon removal..some definite as yep, CD. The only way for inflammation in the ileum with UC would be backwash, and that's usually with pancolitis..you don't have that from what I understand.

Was there any inflammation in the cecum?

well, you were doing the right thing regarding treating quickly. I'm concerned, however, that you dropped from 2 enemas and 2 supps daily to 3 supps daily. Considering how you're training and for a stressful event, I would suggest you stick with the enema at night and maybe one or two supps during the day.

Are you not on an oral 5ASA?

I hope the doc took lots of biopsies throughout to help determine what's going on.

Regarding the 6MP, that's a personal decision whether to up to the immunosuppressant meds. The fact that you aren't determined clearly of what you have, your flares aren't necessarily horrific at this point and if you're not on an oral 5ASA, that route isn't totally exhausted.

to be continued..
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Last edited by quincy; 06-25-2012 at 11:20 AM.

 
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